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Here at CHERUBS we are strong advocates for CDH families meeting in person and getting to know each other and sharing experiences and support! We have many get-togethers around the world and our annual Congenital Diaphragmatic Hernia International Conference as well. But families often get-together on their own informally and below are photos of 2 such get-togethers.

Our latest issue of our newsletter will be out in a few weeks but I wanted to let you know about all the activities we have going on at CHERUBS! 2009 is a very, very busy year here with events going on around the world, including our 2009 International Member Conference in San Antonio, TX in July. I hope to see you all there!

North Carolina Get-Together – in Raleigh, NC. Informal Chuck E. Cheese get-together for local NC families and to help plan the various NC events we have going on! You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129 http://nccherubs.wordpress.com/

May, 2009

Grayton’s Glory 5K Run – May 9 in Alabama. You can reach Leigh for more information at leigh.creekbaum@ubs.com

Michigan Member Bowl-a-Thon – May 17 in Flint, Michigan. You can reach Barb at bwagner@cherubs-cdh.org or 810-845-8480

Day of Prayer for CDH – May 17 around the world! You can reach Dawn at dawn.williamson@cherubs-cdh.org or 919-690-0129

One of our Advisors made a great observation this week. She said that one thing she’s learned in this CDH journey is that you will always come across a few people who believe that they have been victimized more by CDH than anyone else. I agree, unfortunately, those people exist. They have suffered more, their child went through more, they know more, their grief is worse, they will do more for CDH, they are the self-proclaimed “Jesus of CDH” sent to save the world of this birth defect even though they have little experience and even less knowledge of CDH, they will be most popular in the CDH community, they need more support than other parents, their child will be remembered the most, etc…. people whose pain and grief is so great in their own eyes that they fail to see that others are in pain just as much and turn CDH into a competition instead of what it is – a tragic birth defect. These are the people who cause more pain than support, they start arguments, drama, can’t get along with others or do whatever their pain leads them to do without a thought of how it could hurt someone else. This type of person exists when dealing with any tragedy or support group, not just CDH. This type of person seems to flourish on listservs, where they have a captive audience and a lot of direct attention to anything they say. In a huge support group of over 2500 people we have fortunately only had a few such people and they were long ago removed from our membership.

The point of this post is…. there is none of that at CHERUBS.

CHERUBS

CHERUBS

CHERUBS

CHERUBS

CHERUBS

CHERUBS

CHERUBS

CHERUBS

We have not used outdated listservs in a long time. We do not allow drama on our forums or in our membership. Our site and organization has been drama-free for almost 5 years (the last time we had a drama queen we had to remove). No misunderstandings. No cattiness. No mass exodus of members. No quitting of Advisors who can’t get along. No mudsling. No backstabbing. No silly childish behavior. No negativity. No judgement. Only support. On the internet where meanness is common and people can hide behind anonymity to say the most cruel things… this is a rarity to have a totally positive and supportive group. And we are so proud of that!

On our site, parents can talk freely without the fear of being judged.
Everyone is heard. Everyone is supported. There are no drama queens. There are no cliques. There are no popular members. Everyone is equal. It doesn’t matter if you are an advisor, a board member, a volunteer or a new member – everyone is equal. Parents can log on and ask for prayers. They can brag about their child’s achievements. They can vent about how hard it is to deal with CDH. They can share a silly story. They can share their fears. They can cry. And we are here for them, all of them. 24 hours a day, 7 days a week. CHERUBS is here.

CHERUBS name was one that was easy to decide on. Baby angels…. named for all the children lost to CDH. Not cherub, as in one child, but cherubs for ALL the children born with CDH. My son was still alive when CHERUBS was created, it was named for Preston and Andrea – the 2 other CDH babies in the hospital that year that didn’t survive. CHERUBS was founded to be a support organization, not a foundation, so it was very important to have a name that included all of our children.

CHERUBS was an original name. At the time there were no other organizations with the same name that dealt with birth defects. We were very insistent on not following others foots steps or riding on other’s coattails…. we wanted to be independent and this made it harder for us to pave our own way but we are proud that we did. CHERUBS wouldn’t be who we are if we were to use a name or slogan similar to anyone else.

50% of children diagnosed with CDH still do not survive. This takes into account ALL babies diagnosed – not just those whose parents chose to continue with the pregnancy and those babies that survived transport to larger medical centers. This statistic includes those who are stillborn, those that are miscarried, terminated, or die before care can be given. This statistic includes those who live minutes, hours, days, weeks, months or years but who pass away from CDH or related CDH issues. 50%. Of the 1600 babies born with CDH each year, 800 will not survive. The cause is still not known.

CHERUBS is named for them… for all CDH babies, survivors and non-survivors – with or without wings. Cherubs…. baby angels. Miraculous children. Children with wings and halos and hope. Our logo reflects that…. a group of child angels. Supporting each other. Older survivors. Newborns.

CHERUBS Logo

Our colors are all colors of the rainbow…. pastels and bright colors. No trendy logo colors. No logo dedicated to one child or a symbol of one child. All colors, all ages, all children, all CDH families represented.

The word CHERUBS is in a font that is reminiscent of balloons… both for celebrating life and for those who didn’t survive (as grieving parents often send balloons to heaven for our children).

Through the years, our logos grew…

We added logos to include medical professionals.

Medical Professionals Logos

We added research logos to better explain Congenital Diaphragmatic Hernia

Research Logos

We added fundraising event logos.

CDH Golf Tournament Logo

And logos for our Congenital Diaphragmatic Hernia conferences.

CDH Conference Logo

We even added holiday logos.

CDH Christmas Fundraiser

These cherubs represent our real life cherubs, with over 100 different logo characters. These images and logos have been seen around the world. On shirts worn by our members in 38 countries. At conferences. In magazines. In newspapers. On television. On 1000’s of web sites.

The word “cherubs” has become synonimous with CDH kids. CDH kids have even been called “cherubs” in the media, in the printed materials of hospitals, and even at medical conferences. If there was ever a “branding” of a corporate name with CDH, it has become “cherubs”. And it suits. Because they are all little angels…… cherubs.

CHERUBS is almost 14 yrs old. 14 years old. Wow! We have achieved so much over the years. Some parents remember what it was like to have a CDH child 14 yrs ago – there was NO SUPPORT. No information. No organizations. No internet. No library books that explained things. No help from any other organization for birth defects. No nothing. You were alone, without information, without support, trying to stay afloat in all the CDH lingo and stress.

When my son was born the doctors gave me little information. Let’s just say his surgeons he had the first yr of his life did not have very good bed side manners. Any information that I had, I either learned from the nurses, respiratory therapists, neonatalogists or in the medical library myself. I used to lug a diaper bag around the hospital – not full of baby supplies because my baby was lying in intensive care – but full of research articles that I copied out of medical journals in the library. I was in Duke’s medical library so much I had a library card, knew the staff and knew which computers and copiers worked the best. Some days that diaper bag would be so full I could barely carry it. I’d unload the research articles on a tray table beside Shane’s hospital bed, pull out a highlighter and go through each one finding information…. all while he slept beside me drugged up on Fentanyl or Morphine or any number of painkillers and sedatives while he was recuperating from surgery or a complication.

It was in these medical journal articles that I learned that despite the surgeon’s claims that there was only 1 pediatric trach made in the entire world and we had to use it, even though it was causing a stoma so large in my son’s throat that you could see his esophagus and we had to pack and pack gauze in the wound while he cried (under sedation) because it hurt so bad – that there was indeed more than 1 trach manufacturer for pediatrics.

It was in these medical journal articles that I learned that it was completely absurd to use tissue from a pulmonary sequestration to try to repair a hernia because NO ONE HAD EVER DONE IT BEFORE… before it had been done on my son, when I was 19 and he was 3 days old and I didn’t know to say no. I didn’t know because I had no information.

It was in these medical journal articles that I learned that CDH is as common as cystic fibrosis and spina bifida. I learned about recessive genes and possible links to CDH. I learned about Cornelia de Lange Syndrome when the doctors thought Shane might have had it (he didn’t). I learned about using abdominal wall muscle to repair CDH and presented the surgeons with printed articles when they said I was crazy for suggesting it.

I learned and I read and I studied and I learned some more. When Shane came home from the hospital, I continued to learn and read. I signed up for classes at the local community college for medical terminology, biology and anatomy so that I could learn more. I took alternative courses at UNC for genetics and embryology. I learned what epidemiology was and gained a passion for it.

I learned to get Shane a new surgeon – and I did and she was and is amazing, and is still on our Board at CHERUBS, along with many other surgeons and nurses and epidemiologists that I met in my research over the years.

I took all this knowledge… though in the grand scheme of CDH, it’s just a drop in the bucket because no one knows all there is to know about CDH still…. and together with another CDH mom, started CHERUBS. Not because we wanted support. Not because we wanted to make our own cherub’s saints or immortalized or put on pedestals. Not because we wanted recognition or to make friends or be popular… because that’s not our personalities and because that didn’t even exist in the days of writing letters through postal mail. But for 1 reason – because we didn’t want other families to go through CDH alone and without information.

We met more CDH moms and together we took our combined knowledge and we compiled CHERUBS Congenital Diaphragmatic Hernia Research Surveys – by hand. This knowledge bought us to conferences around the country, bought CHERUBS to the CDH Study Group table. This knowledge is what created CHERUBS.

This knowledge is something that parents should have at their disposal without having to go through all I did to gain it, or all Rhonda did to gain it. That is what CHERUBS is for.

14 yrs ago there was no internet. Our organization was started by writing letters, 1000’s of letters. You did not get immediate responses like today’s e-mail – you sometimes waited months. You did not have information within seconds through Google – you drove to a library and you found it in a book.

11 yrs ago CHERUBS went on-line. Our first web site was a year later. There was no free web site software, there was no myspace or facebook. Google wasn’t around yet. You had to hand code html to create a web site. You had to search and search for CDH families to build an on-line support group. There was no free software or blogs to help. There were no other support groups to join and learn from and get members from to start our own. We were pioneers.

We worked hard. We created our site. We added 100’s of pages of information for CDH families. We lost countless hours with our families and cherubs to put all the on-line resources together for other CDH families. We learned what a chatroom was. How to use search engine optimization. How to install a database. We learned how to create graphics and a logo and our own site template. By trial and error, we learned. With no one to teach us, we learned.

Now, in 2008 there are many support groups. Anyone who can create a free blog and fill out a form on the IRS site with free software can create a non-profit support group. Now organizations are taking all CHERUBS has done and our groundwork and building off of it… furthering our cause. Learning more about CDH. Helping more CDH families. Some have said that we haven’t gone far enough in 14 years – but we stared with nothing, we laid the foundation, we broke ground – and we are still working, still building, still doing new things every year.

How far we all have come….. how far CHERUBS and the CDH community has come in 14 years.

We will not stop until there is no longer a need for CDH information, support or awareness – because CDH no longer exists.